Hi Scott,
Can you help please? I’ve been trying to find a contact phone no or email for Dr Halmalgyi in Sydney. I’ve trialled propranolol, nortriptyline & prothiaden for frequent migraine with limited success. The worst part though is the side effects when I put the dose up to 75 mg- I get burning soles of feet & hands at night making it impossible to sleep! Wasn’t too bad on 50 mg but migraines still bad.
My GP is working off your MAV Survival Guide & Dr Silver’s chronic migraine for patients but doesn’t know what to try now! This is all so ‘hit & miss’ I’d love to talk to a doctor who has experience with MAV! The other choice is Dr Waterston - I think I saw a recommendation on the forum. I’m in Adelaide so will have to fly over anyway as driving that distance would be a ‘dizzy’ experience! :?
I’m not Scott but I’m one of those that has seen Waterston in the past. I was really happy with him, and the fact that he was happy to manage med-hopping (if required) via my GP as I live at the other end of the state may work for you as well.
My experience with the dizzy docs in Australia – the three that I know of and the two I have seen – is this:
Halamgyi will offer you Prothiaden first followed by Flunarizine or Cinnarizine
Both Waterston (Melb) and Granot (Bondi Junction, Sydney) will go with Pizotifen first followed by Periactin and then probably propranolol. If these fail, they will simply go through the list of evidence-based meds for this crap. Most docs have their personal favs because it’s what they use most no doubt.
Rauch in the US starts everyone on Nori while one of Baloh’s favourites is Celexa/Cipramil up to 40 mg daily.
I’m not sure there’s any point in flying all the way over here for this. Could you instead have a local GP help you go through the migraine meds with the advice of someone like Waterston behind them to help come up with solutions?
Nice to hear the GP is working off the Survival Guide. I didn’t realise that it might be used this way so frequently and think it’s time I added references to it. It’ll hold more weight for others who want to show their GP.
Let me know what you end up doing. Hope you get relief soon!
Thanks guys - what a fab lot you are giving me all this info so quickly to juggle with! I’ve printed off quite a bit and will talk to my GP about cooperating with Waterston to trial meds. I’ve known him for 30yrs so he knows I don’t make stuff up just to get the drugs!! Sounds preferable to making those flights which may… set me off again on a dizzy trip! What a great place this forum is. Thanks again - will keep you posted.
Barb
If your doc asks you where some of the information came from in the Survival Guide intro, tell him this:
[size=140]Ballenger’s otorhinolaryngology: head and neck surgery[/size]
By James Byron Snow, Phillip A. Wackym 2008
pg 319-21.
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Halmagyi is a top guy (lovely, great doctor, expert in this field) but it can take you a long time to get an appointment and yes, Prothiaden is his first med of choice, which you’ve already tried. That worked for me so I never had to try his other options but I do know he is open to trying other stuff (I mentioned Topamax at one point and he was happy for me to try it). He also swears by Valium.
I would say if you are confident in your MAV diagnosis there’s no real hurry to see one of these experts. As the others have said - we all pretty much know their protocols. If your GP is happy to for you to try all this stuff then I would stick with that unless you get really desperate and feel like you want to go to a guru.
Thanks for all the suggestions. I decided not to risk flying interstate (even tho I have enough FF points for free flight) and try & take on board all the info everyone has provided re other meds instead of the Prothiaden. Still not sure whether to come off it as my migraines are so much better. Don’t want to jump from the fire into the frypan! Saw a Physician here yesterday who went thro all my issues - burning hands & feet at night, plantar psoriasis, reaction (bleeding)to Neotagsin (acetretin) for psoriasis (have tried all the other stuff), high blood pressure, dizziness, etc. (He hadn’t heard of MAV (strrange?!) Anyway he was very supportive & gave me plenty of time to discuss things.
His opinion was that I could well have a reaction to the drugs I’m taking as I have many allergies. He recommend methotrexate for the psoriasis & emailed my dermatologist. He says this is a far better drug than the acetretin (felt like I was being poisoned!). He gave me several SSRIs/SNRIs suggestions to discuss with my GP. He thought that Lexapro was probably the one with least side effects. Apparently Lyrica is the answer to burning feet but can cause dizziness (really need that). He had no issue with Ativan for as long as I need it which reduced my guilt quite a bit! Anyone tried any of these drugs - comment would be very welcome. Thanks
Barb :?:
